andybonse

whats your blood pressure resting, standing, laying etc?

It is a party of dysautonomia yeah, the fluids will deffo of been the main help, more blood = more pressure and easier for your body to combat gravity.

Maybe try florinef on its own? trial 1 drug at a time, otherwise you wont know which causes problems / improvements.

you have to pay mate.

That it is nerve damage and not stretchy veins etc.

OMG YOU BEAT ME TO IT I HATE YOU LOL, I WAS JUST COMING ON TO POST IT .

I purchased the whole article though and read it, it has confirmed my theories.

They are all normal apart from Angiotensin ii. Range is 20-40 and mine is 8.

I dont believe its a floppy vascular system, doesnt make sense since people get it randomly over night, just wouldnt happen.

Got my results:

Cortisol at 8:40am 637nmol/L -

ACTH 38.4 ng/L -

Aldosterone 161 pmol/L -

Renin/Aldosterone RATIO 5 -

Renin 11.4 ng/L -

Angiotensin ii was LOW 8 ng/L (Low Angiotensin is associated with increased urine output and low blood pressure) Seems I know more than doctors lol.

Anyone have any comments?

Bunny, whats the cause of yours?

Hope you can always keep us up to date with these studies! Very interesting. Thanks for the share.

I find stretchy veins to be a bit unbelievable, especially since I was fine all my life until 22 and it suddenly got worse in a day, veins dont all become stretchy suddenly.

I get this!! I get a chest pressure with it too sometimes. It's horrible lol

I tried Midodrine, made me feel weird and dizzy so I discontinued it. Then my doctor wanted to try Mestinon but I don't like the sound of it.

I hate taking any drug lol. So now I am sticking to exercise and seeing if I improve. I may try Florinef at some point.

If not, I'll be saving $10000 and fund it myself lol

There is no research to answer this question. I too want to know.

My doctor is researching this soon, looking at the actual tissue, nerves, vessels of someone with EDS/HMS and POTS/Autonomic Dysfunction. I cant wait.

I cant believe its not been done yet.

OH GOT IT LOL CLEARED MY CACHE, I did used to be a support technician

I went onto DINET site, looks same as before lol am I missing something?

Still looks the same....

Update: I will be starting in a few days, I'm full of cold, sore throat the lot ugh.

upload it here and paste the link http://imageshack.us/

Mines caused by hypermobility syndrome, so probably different to yours, not sure how pregnancy causes pots its strange

My plan will consist of:

5-7 Days a Week Recumbent Biking 30-45minutes HR 130-150bpm increasing to 160-170bpm intervals for 3 Months

Then alternating days with the above, in between days will be resistance bands to build muscle which I have purchased.

6 Months target to see what changes in symptoms,

I'm on day 3 and already feel better even though I've got a cold!! I think the more we decondition ourselves the worse we get.

I used to work in a shop for minimum wage with POTS on my feet 8 hours a day no issues, even eating big full breakfasts then getting back to work, I was lifting heavy things and pushing things around so good workouts,

Then I got a desk job for 2 years, a car and a flat, I'd get up, go to work sit down all day, drive home, make dinner and then sit down and then sleep, repeat.

SOO leaves me thinking why was it I was living a normal life even with POTS and it suddenly changed, the above is the only reason I can think of!

i've just started my exercise plan and am going to keep it up for 6 months, I will report progress and improvements if any!!

Can you link me please cant find it lol.

Hello ,

Does anyone know of, or anyone here that has EDS caused AD/POTS that have gotten a lot better, improved or complete recovery?

Trying to put together lots of statistics .

This can include living a normalish life, then suddenly get worse for a year or two then better.